My Journey to Discovery of AS
I was probably older than most when I was finally diagnosed with ankylosing spondylitis (AS). Now, that is not to say that I had not had it for years prior to diagnosis. As I look back on my life, I suspect I had it for years before but the pain was so unbearable I had to take action. First off, I am a Type A personality in a very high power job. So when I started having reoccurring pain throughout the shoulder region, I put it off to long hours working, a poorly setup desk, and extremely high stress. My feet were also always hurting. Again, I put it off to the high heels I was wearing! I walked everywhere in them! Between when I was an engineer at an astronautics corporation, then working in a medical center, I put in many miles a day. I really didn’t think about it, because I was very fit and had done it for decades.
My AS diagnosis
Finally, one day at work, the pain became so bad I couldn’t breathe, think, walk, sit…nothing. At the time, I was working in the medical center, so I just went down to see my practitioner. She talked to me and recommended a “shot.” Don’t ask me what it was! Again, I was in so much pain I couldn’t hear anything. At first I said no. I hate taking anything, and it sounded like what they wanted to give me was pretty strong. But through the tears, I finally conceded and took the shot. Within 30 minutes, I could walk again and think. My practitioner ran a few lab panels, and came back with the diagnosis of AS. I was 52 years old.
Starting treatment for AS
As I started working with my rheumatologist, I discovered AS is one of the autoimmune diseases, and the fact that I also had ulcerative colitis only strengthened that is was AS. All this was taken into consideration for my treatment plan. Because I had two autoimmune diseases, we had to trial a couple of medications before we found one that did not flare up the other. It took us almost six months, but we finally landed on Azathioprine, with Tramadol as needed for breakthrough pain. We also had the industrial engineer come down and set my desk, computer keyboard, and chair so it was ergonomically aligned. And finally, I had to come down off my high heels! Some of you may think this is not a big deal, but my business style and preference made this a huge deal.
Physical and mental stress
What I discovered was that AS is not only a physical ailment, but an extremely mental ailment too. It took years for me to accept that fatigue and fogginess is part of the disease. It took years to find shoes that supported my health and style. It also took a gargantuan leap to accept that the stress of my high power job was also something I needed to address. Because I was still too young to retire, yet too highly vested in my corporation to just walk away, I chose to relocate to another city to stay with the company so I could protect my retirement benefits. At the time, I could still sit at my desk and mentally do my job.
Managing pain at work
I continued to work for another eight years, but the long hours of sitting were taking its toll on my spine. Also, the continued deterioration of my spine far exceeded any ergonomic fix I tried. I tried adding the sit/stand desk, but the neurological numbness and pain in my legs and feet did not allow me to stand for any length of time. I added the ball to sit on and found this very beneficial because I could roll around and try to keep everything loosened up. By 60 years old, at the end of the day, I would slide off my ball and just lay on the floor stretching and moving around until the pain would subside enough that I could start my evening. What I also saw was that I had no energy or mental capacity to go to the gym or even visit with friends and family. I was miserable.
Learning to live with AS
I retired a few months ago (at 60 years old) and have found the best part of the day is the first few hours. I start with a warm shower to loosen up the back, then a two to four mile walk with my dog Daisy, then to the gym for light weights, more cardio, and stretching or yoga. And, I now have the freedom to take a nap in the afternoon, which is most days. Of course there is still pain. Of course there is still fatigue. But I now have my medication, exercise, and head in the best place it can be to LIVE with this condition.
Do you use the word disability to describe your AS?